Tuesday
Nov102015

« Libby Marsh: Continual Blood Products Help Save Newborn Daughter's Life »

by Tom Rademacher, Veteran Grand Rapids Press columnist and long-time Michigan Blood donor

Their first-born survived just 21 months.

They’d watched him suffer and die. And now, Libby Marsh was giving birth to a second child, a baby girl who also would be challenged with the same disease that claimed the life of her precious Taylor.

A rare and usually fatal condition known as Krabbes Disease was the insidious culprit in both cases, something that affects just one in every 100,000 or so births. A degenerative disorder, it affects the protective coating of the brain and nervous system. Its infant victims often suffer and succumb from a variety of symptoms that can include unexplained crying, extreme irritability, a decline in alertness, developmental disabilities, muscle spasms, loss of body control and frequent vomiting.

And now, Libby’s crystal ball foreshadowed the possibility of all those things occurring a second time.

What she had on her side this go-around, however, was a head start. While Krabbes wasn’t diagnosed in Taylor until he turned 14 months, pre-natal testing confirmed it in Lexus just 12 weeks into Libby’s pregnancy.

“The hardest part, though, was knowing that Lexus would come to be the youngest-ever recipient of a transplant ever attempted for this disease,” says Libby, referring to a stem-cell transplant that her daughter endured just 19 days after her birth.

In their corner, though, was a sterling medical team based out of Helen DeVos Children’s Hospital in Grand Rapids.

And something else – a host of strangers who crossed Michigan Blood’s threshold to donate blood products that would serve to help save Lexus’ life.

 

“My daughter was born in 2002, and she’s healthy now,” says Libby. “I can’t say enough good things about the DeVos hospital.” And as for Michigan Blood, “Oh geez, I couldn’t thank them enough.”

Libby and her husband at the time, Travis Marsh, lost count early on as to how many transfusions their Lexus was given. She was hospitalized for two straight months immediately following her birth, and received transfusions virtually every day during that period.

She received more, as well, on the 30 or more days that followed in ensuing months, when they’d visit the hospital’s clinic, a 4-hour drive from their rural home in Mentor Township, near the city of Mio, the seat of Oscoda County, in northeastern Lower Michigan.

“She was so young,” Libby says of Lexus, “that she doesn’t remember that part of it.”

But Lexus is fully aware of the condition with which she lives. And to demonstrate her gratefulness to all those who had a hand in her recovery from the transplant and with her ongoing treatment, she celebrated her 10th birthday not by receiving gifts, but asking well-wishers to donate cash toward a wide array of services that comprise Spectrum Health.

 

“The whole town of Mio was behind her, and she raised almost $2,000,” says Libby. “Then she went and picked out laundry soap, food items and a lot more to donate to Renucci House (where families can stay overnight while loved ones are hospitalized), to the clinic, the hospital and more.”

These days, Lexus is a healthy teen of 13 who loves listening to “One Direction” and is embracing all the fun and challenges of being an 8th grader.

“She still has a little bit of a medical issues with her muscles and joints,” says Libby, “but she’s super active in volleyball and cheerleading – and she’s a big downhill skier. She just has to work a little harder than some to do some of the things she does.”

Libby and Lexus share their home these days with Libby’s fiancé, Grant Shepard, and a daughter the couple had together 10 months ago, Emma, who is not afflicted with Krabbes.

Grant is employed as a machinist, while Libby serves as a legal assistant at a law firm, and in her spare time coaches volleyball.

Their futures look bright, thanks to the role so many health care practitioners – and Michigan Blood – played in Lexus’ recovery.

To those who came forward with blood products, Libby can hardly find the words. “When you think about people donating to a cause, and they don’t even know the recipient on the other end, well, there’s just so much mystery there.

“All I can say is how grateful we are, and how we could never thank them all enough for everything they’ve done…”